Advocating for Federal Funding for NF Research: The NF Network Advocacy Program

Author: NF Network, Breanna Bronowski-Stutsman
Published On: 02/03/2020

On February 9th through the 11th, the NF Network Advocacy Program will storm the halls of Congress again to meet with Congressional staff to advocate for continued funding of the Department of Defense's Congressionally Directed Medical Research Program (CDMRP) and research at the National Institutes of Health (NIH). Since 1996, advocates participating in this program have been the voice of the NF community on Capitol Hill for 20 years and have been instrumental in generating over $320 million dedicated to NF research

This year, in 2020, 94 advocates from 29 states will educate over 500 congressional offices on the importance of continued funding for NF research.  The NF Network still needs YOUR help! Your support is critical as Congress wants to hear from YOU - their constituents. Share your personal NF story with us, and be a part of one voice in DC as we personally deliver your story to your representatives in Congress. Your voice and your story is what will educate and inspire your elected officials to take action for NF research funding!

Please email your one page personal NF story to, and include a photo of you or your loved one affected by NF. Please be sure to also include your name, address, phone number and email at the bottom of your letter. To view sample letters as inspiration, please click here and here.

THANK YOU for your continued advocacy efforts and your support of the NF Network Advocacy Program. With your support and your voice, we are able to continue educating congressional offices on the importance of these federal research dollars for NF research and help accelerate the search for treatments and a cure to end neurofibromatosis.

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